thereishope

As I look back I think a lot was a out of body experience for me. I have no idea how I dealt with it! I think I had a lot of times when I just was silent and going through the motions. You have to have tight lips so you don't say anything you'll regret. You have to have the energy to get up and run after them if they should do something that need instead tending. You have to have strength if you have a child with rages in order to hold them down at times. You have to have creativity to try to get them to overcome doing a habit or ritual or just to get them to leave the house. You have to maintain a smile and laughter for the other children you may have. By the end of the day, you have nothing left to give and you fall onto the couch either spacing out or breaking out in tears.

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Are they using the steroid as a diagnostic tool or the hoping it jump start recovery? Is your son improving with antibiotics yet? If so, can you describe how the improvement is going? My son had a 5 day steroid burst with his 2nd exacerbation. It helped his symptoms plateau and started the recovery process. For us, it was very beneficial. This is when the disclosures begin... -For some, the benefits of the steroid is temp. The PANDAS symtpoms do come back -I believe the majority of the PANDAS kids in this forum did not have adverse effects from the steroids, but I know for some their behaviors did worsen. I think I can recall 2 that the steroid worsened symptms but they then had sucessful IVIG. -The time frame for seeing the benefits of a steroid vary greatly too. Personally, if your son had adverse reactions to a streoid in the past, I probably would not do it to be honest. Especially if you are seeing improvement right now with an antibiotic. Do you see an easing of symptoms with Ibuprofen?

That's a shame. At least they are still runnng the test, but the participants will lower due to cost. Can you at least take it as a charitable donation on your taxes?

Well, I think this is what Gilbert is doing. He will give a verbal diagnosis of PANDAS but not tell the parent that he is not putting it in writing in their med file. He marks "no" in the med file. Then the ped sees the "no" box marked and figures it's not PANDAS. It is because of Gilbert that I had to fight my ped over my child not being bipolar. Gilbert even prescribed a 5 day steroid for my son. But then when I inquired about it again in another exacerbation he says I'm looking for a quick fix and wouldn't give it. Literally as quick as my son had OCD, Gilbert was anti PANDAS and sending my son to psychiatrist. I don't know why I try to understand that man. I don't know what he is accomplishing by messing with these parents. I want to address him on this, but I don't even know if that's a good idea. I don't want to give him "insider information" about ped's getting the truth. I'm suprised your friend's son got PEN VK for a year. Hopefuly that is s sign that ped's are opening their eyes. Even when I've questioned docs about their treatment of Rheumatic Fever and prophylactic antibiotics, they pretty much dismiss me, change the subject, or if on the phone, abruptly hang up.

Oh, no! You have no idea I want to put the disclosure "if you suspect PANDAS, please do not see Dr Gilbert". All the parents, doc, etc that I need to reach out would be sent to him. I just hope they contact me first. What I am hoping and praying for that is f I can even get a couple of doctors to read what I have to give, they may question what Gilbert preaches. All the docs I want to contact refer to Cinci Children's. I can't deface him to the local peds. They will never read or listen to what I have to say. This is not good. Just not good. If you want pass on my email to your friend, let me know and I'll send it to you. I live in Anderson Township to be more exact.

Beautiful kids! Thanks for sharing. That is a weird coincidence. Cue Twilight Zone music....

Well, strep can occur in other places, not just the throat.When you get the negative rapids and cultures, get strep tests on other family members too. Some PANDAS kids will have an exacerbation with only exposure. You can also have a PANDAS child go a long span without PANDAS symptoms only to have them resurface when a trigger for that child reappears. In regards to your original question, I think some kids diagnosed with TS may be misdiagnosed. Same with kids with OCD. I'm not saying all kids are misdiagnosed. As for the vice versa...like Peg said, I don't see how the child would get an official diagnosis of PANDAS if they didn't fit the definition and especially if great improvement followed an antibiotic. From what I understand kids that have already been diagnosed with TS do have to be more careful when a doctor wants to use a steroid as a diagnostic tool because if it ends up that child does in fact have TS, tics can worsen and perhaps not get better. But, that has been a debate in this forum before. To be honest, my son never had tics, do I didn't have to worry about that. Your son may have triggers that you're not aware of. Like it was said before, triggers for a PANDAS child may be... strep, viruses, allergies, exposure to strep or other illness, vaccinations, stress, some kids have had an excerbation following dental work more invasive than just a cleaning. Also, the excerbation may happen after the event occurs. Vaccinations for example. I think the exacerbation may occur up to 2 weeks post vaccination (someone correct me if I'm wrong here). You just really have to log everything. With viruses, some have noted a setback a few days following the fever. Every child's triggers are different and you'll have to log everything to see whhat his may be..

I would suggest to anyone who is having a hard time finding a doctor in their area that knows anything about PANDAS, to see if there is a DAN by them. That used to be mentioned more on this forum and it kind of stopped being mentioned. Wonder why.

One of my biggest worries I have....I don't know if the word "worry" is it, is how many kids cannot get help because of funds. It sickens me when I think about how you may only have a healthy kid if you have the money. People say "find the money somewhere". Well, it isn't like that for a lot of people. With people losing jobs, credit limits being lowered... some people simply can't. This is why PANDAS needs to become more accepted in the medical community. So all kids get the treatment they deserve. Sorry, I brought that up since most DAN doctors do not accept insurance.

Thanks for the ideas! I understand what you mean about the FAQ sheet. It makes sense. I suppose if the defintion of PANDAS itself sends up any red flags for them, they will contact me via personal email or come here. At that point, we/I can provide more information. Do you think for the school, it would be okay to provide the links I suggested? I could put a header like... "Suggested links from a Family Living with PANDAS". For the school, one the most important things ( besides a list of possible PANDAS symptoms) I want to get across is that you can have strep w/o classic symptoms. I was one of those parents who googled sudden onset OCD, PANDAS popped up, and dismissed it because I thought my son didn't have strep. I could end up having a differnt packet for the school and a different one for the doctors. I know the pediatricians will only read what I have backed by research.

In my school district, there is a parent support group for kids with IEP's, 504 plans, special needs, and parents with any concerns about their child and school. I contacted the parent in charge and asked if I could supply packets with PANDAS info to be distributed to the counselors, psychologists, etc within our district. She said she'll look into it and wanted me to send her info so she can also have it avaiable at the next meeting for parents. So, I'm thinking what should I include? I was thinking of the PANDAS Fact sheet, FAQ sheet, a suggested links page. Anything else? I don't want to include too much, but this is a chance to inform a lot of people. For the sugested links, I was going to include PANDAS Network This forum Saving Sammy Book Link to Today Show when they announced Lauren's diagnsois Link to Beth Maloney's Saving Sammy Today Show appearance My personal email I think whatever I put together will be what I send in a mass mailing to local docs too. I kind of want a brief intro page so if they only scan the packet, they will at least catch the most important thing and convince them to read more. I thought this should be the possible behavior changes. Any input is appreciated.

I've thought that for awhile. I stumbled on a website a bit ago that was interesting. The dr 's theory was that autism, Asperger's, OCD, ADD all stem for the same thing. It just manifests in different ways depending on what age it surfaces. I was going to email him his opinion about PANDAS, but never did. The website was put up around 2003. I'm glad we're having this conversation about autism. Granted, perhaps it should have been in a separate thread so more may have hit on it. But then this forum does have a tendency of going off topic. The connection is is occassional touched here but, to my suprise, hasn't had a real coversation devoted to it.

Don't apologize! I really believe there is a bridge to be built between the "autism community" and the "PANDAS community". There's a lot we can learn from each other. Have you approached autism organizations that you support to voice your fight and how PANDAS is part of it? I know life is busy and you have your hands full, but you should consider it. Do you have a theory or opinion about how many kids diagnosed with autism actually had PANDAS surface in infancy or toddlerhood?

Those good days sure help you deal with all this. Whenever a day is consider more good than bad, it's a successful day to me!

How do insurance companies "treat" autism now? Are they continuing the push to consider it a diagnosis so they don't have to pay for certain services?

When my son went through the dirt/germ/contamination thing, he couldn't play with kids. He wanted his friend over,but there eouldn't play with him. He found it easier to leave the room while the boy played in the room by himself because it was too much to see him touching his things. Then those things were bad and he couldn't play with them anymore. So the "no to having friends" may not be the OCD but a result of an underlying issue. Also, maybe the thought of another child messing up a game drives her crazy just thinking about it to the point that she's bothered with the playdate an dit causes anxiety before it happens.

My son has PANDAS OCD. The psychologist found it interesting. He never had tics as his PANDAS symptom, but his OCD was a combo of classic OCD with some characteristics of what she said was the OCD that is exhibited by someone with TS. So that leads me to believe that the OCD exhibited by PANDAS kids really can vary. Maybe some have all classic OCD, some have the OCD associated with TS and some have a combo.

OCD, as defined by the general public, has broadened. It has become a joke for anyone who has a high interest in something or a passion. Just because you like a clean house, doesn't always mean you have OCD. Just because you love Star wars, buy the toys and leave them unopened in boxes, don't let your kids touch them and have insurance on them (my husband) doesn't always mean it is full fledge OCD:) Now, with PANDAS not all kids have obsessions. My son didn't have obsessions for all his problems. He had many rituals and routines that needed to be completed but did not associate it with anything horrible happening if it wasn't done. It's hard to explain. The psychologist said that that can be the case for some with OCD. She also said that the OCD associated with TS may vary than a person who has OCD but not TS. Overall, I think if you try to stop the person from completing the compulsion and that person has high anxiety that takes a long time to go away, it is time to consider OCD. The "average" person should be able to walk away. Maybe the thought lingers but they can move on. With OCD, you cannot walk away and simply move onto the next thing.

Bumping this up since there's a lot of OCD questions today.

Welcome! Some PANDAS kids react to strep exposure and some kids have reactions to vaccinations so that may explain what happened in Oct. He had a double whammy. Others have had the compulsion to tell on themself or to only be honest. As for the sexual thoughts or worries, I know adults with OCD have those. I'm not sure about those on this forum. Hopefully mroe will chime in. Also, if you were around the kids that had strep, you will want to rule out other family members having strep as well.

He sounds like my husband who is going on ebay every night in search for some Ben 10 toy my son wants at a good price. My husband is obsessing about it and I finally got my husband to admit it was OCD. But he can leave the situation and go with his life. It doesn't fully encompass it. I wonder if it's the green goblin my son is getting for Christmas:) As for the reference to autism and Asperger's, my son who at the age of 5 1/2 never showed signs of Asperger's. However, when we went to psychiatrist, she had to screen him for it because so many disorders were present at once. There are actually a lot of similarities between autism and PANDAS and a good number of parents in this forum have been told that they should have children screened. In fact, it was just PANDAS causing those autism like symtpoms to surface. So, even if he for sure did not fit into the autism spectrum some similar quailities might have surfaced as a result of PANDAS. It doesn't mean he actually has autsim or Asperger's. Kids can have healthy obsessions. It's a hard things to distinguish when that child has PANDAS/OCD qualities as well. I think if he can change the subject upon request with not having to add "one more thing" I would just keep a close eye on it and monitor it. Also, ADHD and OCD often go along together and ADD and ADHD is a symptom that surfaces with PANDAS for some kids.

My son went back and forth who he'd freak out more around and who he would probably calm down for more around. There were times, I called my husband at work and he'd have to drive home to calm my son down or give his meds cause I just couldn't get through. But for my husband, at that time, he'd be fine. But, then, most of the time it was I who had to calm him down when he was having meltdowns or high anxiety. I tended to be the more creative thinker of how to get through to him and bring him back. Even though it wasn't my husband's fault I had more patience and more of knack for it, I did find myself at times being mad at my husband for not being able to help.

That's a hard one. My 6 year old talks about the shows he likes constantly but I can see that it is acceptable for him. Does he expect you to re-enact shows with him or anything and if you do it the slightest wrong, he flips out? Since you said when you ask him to change subject, he does.... that a very good sign. Do you have to ask him 100 times before doing so? Does he like/talk about ONLY Spiderman? Or does he have a few favorites but Spidey is the favorite of them all? I also have an 8 year old. He has his favorites too but he doesn't talk about them constantly. Only every so often if there is a prompting for it. Let me think on this one some more.

I think it's okay to worry about the other kids' behaviors being PANDAS-like. We all want to nip in the bud if we can with the other kids. We all look at things in a different light now and the more I hear about siblings being diagnosed with PANDAS, the more I worry about the little things I see too. But I have not gotten to the point of red flags or even thinking about the need for a strep test. Maybe because my oldest doesn't appear to have PANDAS so I have experienced the ups and downs of a non -PANDAS child more? Whereas, you're oldest has PANDAS. You may not necessarily have that baseline of "regular" child tantrums and behaviors to compare to. Just do what the others suggested an log the behaviors that you truly worry about. When you look at them as a whole, you may be able to decide if you want to explore PANDAS with the 5 year old or not. I would write down the date, what prompted the behavior, reaction to it, how long it took to overcome any anxiety, rage, meltdown. What did they do afterwards.